I’m spiralling, scared because of my symptom progression. Would love to hear your thoughts.

[ssutton16]

Hi all! Firstly, I’d like to thank anyone kind enough to respond, I can’t begin to imagine what it’s like to be a PALS or CALS.

So I’m a 24yr old white male. No known family history. I fully appreciate this puts me in the rarest category already.

Feb 25: started with an odd feeling in my toe, thought maybe I was coming on with gout, laid of alcohol for a bit. Started with a tightness and a twitching in my calf also (same leg) but brushed everything off.

Mar 25: had an unexpectedly stressful and emotional month. Major concerns about a loved one over a couple of weeks cause a lot of distress, crying etc. This was tied at a similar time with interviews for a new role (which I actually really didn’t want) at work that would’ve meant huge lifestyle change. I went away on my own for a weekend and suffered a series of panic attacks that I thought were cardiac related (never had any before, not an anxious person either). Came home, had another couple. One day that same week I suddenly had a numbness/oddness in my left sided leg, arm, and face (same side as toe thing) and went to A/E as I thought I was having a stroke. Cleared of that all fine. The issue in the toe now moved to the foot and lower leg, was like a heaviness. Went to GP, did some bloods, told to monitor.

Apr 25: issue now moves into left arm and left leg, again heaviness, no difficulty doing tasks but bit of a perceived weakness, GP couldn’t see any issues in strength or reflexes. At this point I’m not even sure what it is, MND/ALS hasn’t even crossed my mind. Get a bit of joint pain but probably not related. Weirdly notice my right leg was actually fatiguing quicker than my affected left leg. Towards the end of the month I make the mistake of googling and coming across ALS. Obviously scares me, end speak to the GP. Shortly after I start with body wide twitching and up getting Globus that subsequently subsides (twitching still happening). Tight hands also.

May 25: Globus sends me into a spiral, plus my gait become impacted, feels like I’m having to consciously think when moving my left leg when walking. No foot drop/slap. Go to see a specialist Neuro who examined me and says he’s not concerned by will send for an EMG and MRI as he believed it could be a trapped nerve affecting left side. In the meantime, issue heads to the right hand side and walking becomes difficult with both legs now struggling. EMG comes back CLEAN, nothing on scans either. EMG did two sites in both calves, thighs, then one in each forearm, my left bicep, my jaw muscle, tongue and lower back. But I only activate for one muscle which is playing on my mind. Specialist didn’t mention anything concerning on clinical inspection either, but I’ll admit I didn’t ask.

Jun 25: I can now no longer walk more than 500m without having to stop, getting really tricky. Globus is back but way worse. Tongue twitching started. Hands feel really tight, my thumbs are aching a lot even typing this. I’m super concerned about bulbar onset. Of course I know this is probably silly and I recognize that a lot of this will be anxiety but noticed voice weakness that everyone else doesn’t but they often ask me to repeat things because they didn’t hear so that’s confusing.

I can still button a shirt, walk on heels/toes. This is keeping me somewhat sane alongside the EMG.

All in all my mind is a mess at the moment. I’m petrified and my symptoms are just getting worse and worse in all four limbs. Twitching is relentless and I’m exhausted with insomnia and fatigue.

Thank you endlessly to anyone who has the time to respond. I’m so sorry for any frustration caused with PALS/CALS who would pray to be in my situation if you think I’m being ridiculous. This has consumed my life and I’m scared.

 

[ShiftKicker]

Hi there-

A clean clinical, a clear EMG. You list things not at all associated with, or cause for concern about ALS- moving around, sensory, etc. You also have an obvious awareness that this is at the very least amplified by anxiety. What are you doing to address that aspect of your health? With a focus on ALS and increasing anxiety as you continue to research, it's possible you are getting in your own way, asw ell the way of the doctors in figuring out what the issue might be.

You'll note I am not dismissing the fact you are experiencing physical symptoms, but I am stating ALS is not the issue and that you are very likely making things worse by not dealing with your health anxiety. I think that you and your doctors would be better able to untangle what the cause of your symptoms might be if you also speak with someone who can provide some tools to deal with stress and address your sleep issues.

Highly recommend you not visit ALS focused sites or do any further online research- it is triggering. You also deserve support by someone qualified to help with ways to mitigate stress/anxiety while you continue to work with your doctors to track down any physical issues.

Take care

 

[ssutton16]

Shiftkicker, thank you so much for the reply.

I was doing a lot better after the clean EMG but progression of symptoms (particularly pronounced jaw fatigue and noticed an asymmetrical soft palate re bulbar concerns) really pushed me over the edge this time. This forum has frequently been a reassuring space but I also think taking everything in has had its issues.

I’m having CBT and really trying to let it work.

Functional Neurological Disorder has been floated by my Neuro but due to limited information out there it’s not the easiest to understand.

Before I go, you don’t see cause for concern? I had interpreted the fatigue/gait issues/stiffness as spasticity, and then the tongue, Globus, and soft palate asymmetry as bulbar onset.

Thank you again for getting back to me, I know there are far more worthy and pressing matters on this forum, I really appreciate it.

 

[ShiftKicker]

Hey,

I think you are asking me to repeat my prior post if you are once again asking me if I see no cause for concern. That was the whole point of my first reply. It is very clear you are looking for reassurance, but seem unable to take in what has been provided- clean clinical, clean emg, information about what is and what is not considered concern for ALS (see the "Read Before"). If that's not working for you, you will have to return to your doctors to discuss what can be done to help you reduce your anxiety.

All the best

 

[lgelb]

Agree w/ tackling the anxiety./sleep thing and then see what is left physically, if anything to worry about. Poor sleep can certainly lead to fatigue/exercise limits during the day. And it is obvious that you shouldn't be here or any other site relating to ALS.

If you are stressed in sleep, you might ask your dentist to opine on whether you could benefit from a bite guard to rest your jaw and protect your teeth.